NEWSLETTER DECEMBER 2012
Guillain-Barré Syndrome
SUPPORT GROUP NEW ZEALAND TRUST
Registered N.Z Charity No. CC20639 Charities Act 2005
Information published in this Newsletter is for educational purposes only and should not be considered as
medical advice, diagnosis or treatment of Guillain-Barré Syndrome, CIDP, related neuropathies or any other
medical condition.
If undelivered please return to:
Chris Hewlett
51 Killen Road, RD 2
Katikati, 3178
New Zealand
Patron Hon. Steve Chadwick
President Bob Stothart 4/326 The Terrace, Wellington, 6011 Ph: (04) 385 0240 Email: [email protected]
National Coordinator Jenny Murray, QSM 27 Grenville Street, New Plymouth, 4310 Ph/Fax: (06) 751 1014 Email: [email protected]
Secretary Tony Pearson 113 Weka Road, Mariri, RD 2, Upper Moutere, Nelson, 7175
Ph/fax: (03) 526 6076 Email: [email protected]
Treasurer Peter Scott P.O. Box 4162, Palmerston North, 4442 Ph: (06) 357 8436 Email: [email protected]
Newsletter Editor Chris Hewlett 51 Killen Road, RD 2, Katikati, 3178 Ph: (07) 549 0931 Email: [email protected]
Publicity Officer Maria De Cort 5 Fraser Street, Clyde, 9330
Ph: (03) 449 2232 EMail:[email protected]
Medical Advisor Gareth Parry ONZM.MD.FRACP.ChB
Web Site Support Education Research www.gbsnz.org.nz
Medical Advisory Board
Dr Gareth Parry ONZM, MB, ChB, FRACP
Professor Emeritus, Department of Neurology,
University of Minnesota, USA.
Dr Suzie Mudge Director & Physiotherapist Neuro Rehab Results
Senior Lecturer/Senior Research Officer
Health and Rehabilitation Research Institute, AUT
University
Dr Chris Lynch Neurologist and Neurophysiologist at Waikato Hospital
Honorary Senior Clinical Lecturer at the Auckland
Medical School Waikato Campus
Dr Pralene Maharaj Pathology Registrar ADHB
And Trainee in Pathology with the Royal College of
Pathologists Australasia
Member of GBS Support Group since contracting GBS in
2006
Dr Dean Kilfoyle Neurologist Auckland City Hospital
Auckland District Health Board
Dr. Annette Forrest ICU Consultant
MBChB, BPharm, Dip ag & Vet Pharm
Board of Trustees
Bob Stothart Tony Pearson Ken Daniels
Peter Scott Dr John Podd John Davies
Don Martin Chris Hewlett
Maria De Cort Meike Schmidt-Meiburg
Chris Hewlett
Meike Schmidt - Meiberg
Grant McKay
has gone from
house husband
to king of the
road.
He is loving
his new found
independence
and freedom.
I ………………………………………………………………………………… (Name)
of …………………………………………………………………………………
…………………………………………………………………………………… (Address)
Declare this to be a …………….. (first/second) codicil to my Will dated ……/……/…….
In addition to any legacies given in my said Will I give to the Guillain Barré Syndrome Support Group New Zealand Trust, of 113 Weka Road, Mariri, RD2,
Upper Moutere, Nelson 7175 (or any other premises which the Support Group may hereafter occupy) a charity registered in New Zealand No. CC20639,
A share of …………………... of my estate or the sum of NZ$ ……………. and/or
……………………………………………………………………………….. (a specific sum)
to be used for general purposes and I declare that the receipt of the Treasurer or duly authorized officer shall be full and sufficient discharge. *
In all other aspects I confirm my said Will and all other codicils thereto.
*please complete as required and cross out those options not required.
Signed ……………………………………….
Signed by the above named in our presence and witnessed by us in the presence of him/her and each other
Witnessed by: Witnessed by:
Signature……………………………… Signature……………………………….
Name …………………………………. Name…………………………………..
Address……………………………….. Address………………………………..
………………………………………… ………………………………………..
………………………………………… ………………………………………..
Occupation……………………………. Occupation…………………………...
Date…../…../…….. Date…../…../……..
Codicil to an existing Will
If you have already made a Will you can still help the Guillain Barré Syndrome Support Group by adding a
codicil to your Will.
If you would like further information or would like to talk to a Trustee of the Group about making a bequest
to the Charity please contact us on 03 526 6076.
We do advise consulting with your legal advisor before completing this codicil form
Please take this form to your legal advisor
Obituaries
Since the last newsletter we have received word on the passing of some of our members.
George Wadsworth died 4th September.
Henry C Senior died October aged 91 years
Pat Baker died 9th October.
Marie Oliver died September aged 90.
We send our heartfelt sympathy to the families of these members.
A very big thank you to Marie Oliver who left $100 to the
Support Group in her will. We appreciate this very generous
gesture
Editors Note
11 years and
3 days after
getting GBS I
found myself incapacitated
once again
and reliant on friends and family for my well
being. Once stitched up, my ears
suffered badly, as those who
think I am too old to be doing a bit of off road motorcycling told
me so. My cousins response to
my aunt was “And she‟s how old”. Back on crutches and
confined to keeping my leg
elevated for the next few weeks, I shall try and not go crazy with
boredom. At least I have had the
magazine to produce. Might not
be doing any dancing at the work Christmas party this year, which
some may say is a good thing.
Annual subs are now due and a
form is included in this magazine.
Please get these into Peter sooner
rather than later. Due to costs and the small income the Trust has to
operate on we can longer send to
those members who are not financial.
We have had another successful
Bay of Plenty get together, with 17 people (including partners and
friends) coming to our Christmas
luncheon. Thank you everyone for making these such fun and
successful events over the year. If
anyone in would like to organise something in their area I am
happy to help get you started. All
you need is a suitable venue, the
desire to meet fellow sufferers and a liking for coffee and cake.
These events can be put on our
Face Book and Web pages for
maximum exposure.
We have had a few cases of GBS reported in the BOP/Waikato area
lately. Talking with others at our
luncheon this seems to be the time of year for outbreaks in our
regions which makes us ask the
question WHY? Is it because
immune systems are down after winter or what? Can our medical
board provide a theory?
Our best wishes for a speedy
recovery go out to these people
and their families.
I wish you all a very merry
Christmas and happy New Year
Chris
Presidents Paragraph:
My wife
Margaret and
I attended a Neurological
Foundation presentation at the
Wellington Opera House recently. It was part of the
foundation's Progress Through
Research programme which they have presented in Auckland,
Wellington, Christchurch and
Dunedin. The Wellinton
occasion was MC'ed by Kevin Milne in a lively and entertaining
manner contributing to an
informative and valuable evening. Speakers included Dr
Jon Simcock and Auckland
neurologist, Associate Professor
Bronwen Connor a researcher from Auckland and Associate
Professor Anne La Flamme of the
Malaghan Institute. While GBS
was not mentioned there was
much discussion about other neurological conditions. What
was really significant was the
quality of research being undertaken in New Zealand,
including stem cell research and
the significant progress that is being made on a number of
disabling conditions. We all
benefit from this internationally
recognised research.
I was not able to attend the
GBS/CIDP International Foundation's symposium in Fort
Worth in October but speaking
with Professor Gareth Parry who
was there, he told me there were about 400 delegates 200 of whom
were first time attenders. In other
words half of those there had
encountered GBS or CIDP and
wanted to understand more about their particular malady by
attending the symposium. I
would leap for joy if our conference, being held next April
in Wellington, attracted a 50%
response from people who had never been before. This is the
only conference on GBS/CIDP
held in New Zealand and we
work hard to assemble a programme of informative
speakers. If you possibly can,
regular attender or first timer, come to the conference and I
guarantee you will benefit from
it.
Bob
Secretary’s Jottings
“From the very beginning the
medical staff gave us literature from
the GBS Support Group and
encouraged us to make contact. So I
did and spoke to a very helpful
lady and joined the online
Facebook group. I was instantly
overwhelmed by the kindness and
support shown to me by members
of the group who had had GBS or
still had it or CIDP and then
continued to offer us support
throughout Martin’s illness”
The above is an extract from a story
in the Autumn Edition of the UK
GBS newsletter “In the Know” from
a Mum about her teenage son‟s
encounter with GBS in January of
this year. The Italics of the first
sentence are mine but it was just that
simple statement that made me sit
up! – so ….. if it can happen in the
UK then WHY OH WHY does it not
seem to be happening in New
Zealand. We all know we can do the help and support bit ONCE we have
made contact but so often the contact
is by a chance encounter/contact with
another GBS‟er – who someone who
knows one – or by the diligence of
the sufferer ( or more often their
carer) searching the web .
We can keep sending out literature to
medical centre‟s and we can develop
our “educational visits” to nursing
and other medical staff but this is something we have tried for many
years and, generally it is met with a
(at best) lukewarm response from the
medical hierarchy. The KEY ??? –
well I think it lies in the nationwide
development of the Hospital Visitor
network much as has been done by
the UK Group. As with so many
things in this country it‟s not “What
you know” but “Who you know” and
I am certain that once the medical
teams that deal with GBS patients get to know a “local” face and recognize
a capable and sensible authorised
member of the Support Group who
can provide focused support based on
experience to their patient without
threatening the team‟s medical
competency THAT‟S when we will see a change in the number of
contacts stemming from information
about the Group passed to their
patients by the medical teams.
The April 2013 Conference kicks off
on the Friday afternoon with the first
of what I hope will be many
gatherings around the country to
provide the skills and guidance to
those who are willing to volunteer
for this most important role. I look forward to joining that first gathering
and meeting you there.
Since the last Newsletter I have lost a
good friend, John Mason. John and I
met at our local Sailing Club here in
Motueka soon after I arrived in NZ.
It turned out that we had grown up in
the UK not so far apart – John in
Hampshire and me on the Isle of
Wight – just a short boat trip apart! John was initially diagnosed with
CIDP a year or so ago but the
“standard” treatments did not seem to
be helping ,in fact quite the contrary
and it was not until Dr Gareth Parry
got involved during one of his
periodic visits to Nelson that our
local medics accepted John was
afflicted by something unrelated to
GBS and began to try other remedies
– but sadly to no avail. Throughout
his illness John remained alert and willingly helped me put together the
paper on the availability of financial
and other assistance to GBS
sufferer‟s – the last Newsletter
contained an article from John about
his ( generally positive) experiences
of working with WINZ to alleviate
some of the financial burden that
inevitably comes with a prolonged
illness. I shall miss you my friend.
The past few months have been quiet as far as new GBS/CIDP cases in the
Top of the South coming to my
attention. You will notice I am NOT
saying there have not been any cases
– just I haven‟t heard about them –
Am I beginning to sound like a stuck
gramophone record ?!
Thanks to the good offices of the NZ
Organisation for Rare Diseases
(NZORD) and its CEO John Forman
we (that is Chris, Lil, Ken and
myself ) have been WEBUCATED. NZORD‟s Webmaster Ben
Chapman was keen to pass on some
of the responsibilities for the
structure and operation of our
website to the Group (a policy that is being applied to all Group‟s who
operate their websites under the
NZORD‟s auspices). As I mentioned
in the last Newsletter such skills
don‟t necessarily come naturally and
so it was agreed we should assemble
in Wellington for a day‟s tutorial. So
now, hopefully, we can pretty much
run our website within the Group.
Ben is still helping us develop the
“new look” 2nd generation website
and will continue to handle some of the tricky “geeky” bits of stuff that
the system‟s servers require – but if
you spot a gaff on the site let any of
us “Webexperts” know – because it
will be our fault!
If you are planning to come to the
Conference in April it would be a
GREAT help to me to get you
registrations in as soon as possible.
There is a surprising amount of administration involved in setting up
delegate information and whilst none
of it is Rocket Science it does take
time and if I have to rush things at
the last minute then the inevitable
errors will occur. Currently I am
dealing with a potential delegate
from Nepal – I leave you to guess at
the bureaucratic mountain of
paperwork that is accumulating in
order to get him a visa to visit NZ!
I have applied to Lottery for funding assistance to help defray some of the
costs of the event – the last two
Conferences have left a hole in
Peter‟s accounts – and whilst we do
have a strong Balance Sheet it is not
a situation that can be tolerated
indefinitely – so fingers crossed
please.
And finally, the latest Communicator
from GBS/CIDP International
contains a letter from a spritely 93 year old ( got GBS at 70) who
continues to apply to his life an
expression given to him by his
therapist whilst recovering from
GBS:
“inch by inch anything is a cinch”
Not a bad concept!
As always
take care
Tony
Ironman challenge a ‘personal crusade to show CIDP who’s boss’ - By Maria De Cort
A Hawke‟s Bay woman who was
once told she may never again walk unaided is embarking on her
toughest challenge to date,
training to complete the Kellogg‟s Nutrigrain Ironman
New Zealand next March.
Kathy Eggers is a 39-year-old
mother of three, part-time nurse
and “newbie triathlete”, living
with Chronic Inflammatory Demyelinating Polyneuropathy
(CIDP).
Five-and-a-half years ago when
Kathy was first diagnosed the
disease attacked her peripheral
nervous system to the point where she lost control and feeling of her
arms and legs until full
quadriplegic paralysis set in.
Several times since her first
“encounter” with CIDP she has had to relearn how to feed herself,
walk, write, care for herself and
her family.
As her medical team devised an
intensive treatment regime to
stabilise and then control the disease, Kathy used sport and
physical activity as her main
rehabilitation therapy.
“Goals were set initially to master
sitting, then standing, leading
onto walking a few steps, to then reaching my letterbox, which then
turned into ¼ block, then 1km
and so forth. My first duathlon was in April 2008 – exactly a
year from when I became unwell.
I could barely feel my lower legs,
let alone my feet, but I completed the 2km run, 11km cycle
followed by 2km run, which was
more like a „waddle‟.”
Since then, and still continuing
with a rigorous treatment regime including regular blood
transfusions,
immunosuppressants and other
medications, and through several
relapses that saw her immobilised
again, Kathy has clocked up an impressive track record of
multisport events for a woman
told by specialists at the time of diagnosis that she may never
walk unaided.
Having run her first half
marathon in August 2009, she has
gone on to complete two half
ironman competitions and a full marathon, as well as regularly
competing in duathlons,
triathlons, lake swims and mountain races. In the lead up to
next March‟s Ironman she will
compete in the Taupo Half
Ironman on 8 December as well as several provincial triathlon
events.
Kathy says she decided to take on
the ultimate multisport challenge,
an Ironman, as a “personal crusade to show CIDP who's
boss” but added motivation for
doing the event is “because I can,
for those who, due to illness, can‟t”.
“CIDP is such a rare disease and is still considered a medical
mystery, which can affect anyone
at any time in their life, and for which the majority of sufferers
never regain their former state of
health. I am doing this event to
raise awareness of CIDP and GBS and doing it for those who,
due to ill health, can‟t!”
Kathy says the Ironman – which
involves a 3.8km swim in Lake
Taupo, 180km cycle leg and a full
marathon (42.2km) to finish – will be “gruelling to say the least,
but so is living with or through
GBS or CIDP”.
“I hope to inspire those living
with CIDP and GBS that anything is possible, while encouraging
others to set goals and step out of
their comfort zones in making
their dreams come true!”
Kathy is using the race as an awareness raiser and has been
fortunate to have Kellogg‟s select
her as one of three athletes to sponsor for the event (the others
being Prime News presenter
Charlotte Bellis, a fellow rookie, and a 27-year-old Auckland
firefighter and semi-pro triathlete
coming back from injury).
Kellogg‟s generous sponsorship includes paying Kathy‟s entry
fee, financial support towards
coaching and training, kitting Kathy out with race gear (on
which the GBS logo will find
pride of place) and utilising its
PR team to get Kathy‟s story out to the world.
Look out in the NZ Woman’s Weekly due out 10 December for
a feature on Kathy and if you are
going to be in Taupo on 8 December or March next year –
be sure to have your cheerleading
pompoms and banners ready and
voice at full strength! The rest of us will be there in spirit – “Go
Kathy!”
My GBS Experience - Paddy Rule My GBS experience started in
November 1998. I was 56 years
old and working fulltime as a receptionist for an osteopath. In
October I had a bout of flu, as I‟m
asthmatic, ended up with a chest infection for two to three weeks,
got over that OK.
My husband and I decided to
have a night away at Waiheke
Island, a favourite place of mine.
Had a very enjoyable time, went out for dinner and next day went
for a long walk. Coming back to
our cottage, there was a very steep hill and I had a lot of
trouble walking up it. I thought it
must have been that I was still short of breath.
The following Tuesday, my
grandson was at a school camp and I had gone down to help on a
bush walk in the Huia Ranges.
This again was very steep, but I had done it many times with no
trouble. The track was very
slippery after rain and I found it
very hard going, falling many times. I kept using my inhaler as
again, I thought I must be short
of breath. I had to go to work later that afternoon, by this time
my feet were feeling all tingly. At
the end of the clinic I asked the osteopath if he would check my
back as I thought I may have hurt
it after all my falls, but my back
was fine.
Next morning I started work early
and my employer asked how my feet were. By this time tingling
was travelling up my legs and
also in my hands. He told me to see my GP as soon as I had
finished work. I did this and by
the time I saw him the feeling of
pins and needles was to the top of my legs and arms. I had a doctor
who is extremely good at
diagnosing and straight away said he thought I had GBS. I had
never heard of it. He made me an
appointment to see a Neurologist
the next day. I saw this Doctor
and he immediately admitted me
to hospital. By this time I
couldn‟t walk without help and
was numb up to my waist and in a lot of pain. Had a lumbar
puncture done, which confirmed
GBS. I was very fortunate as the paralysis stopped at my
diaphragm so I didn‟t need life
support. I could use my hands a little but had no strength in them.
My stay in hospital was not a
good experience. Most of the staff had no idea what GBS was. I
was in a 6 bed ward, 5 men and
myself. The men were very kind, cutting up my food etc. I had no
physio or any suggestions to help
me move a little easier. Unless I
was hanging onto someone I fell all the time. I was told I would
get over it and nobody dies from
GBS. Finally I asked if I could go home as I could get more help
there. I was told to take panadol
for pain and was discharged.
On the way home a car cut into
our lane nearly hitting us. My
husband had to brake hard and my head jerked forward and back
sharply.
Good to be home and family were
wonderful. I had to sleep in an
armchair as the pain was bad lying down. A day or two after
coming home I started to get
severe headaches. The pain went
up to my neck across my skull and was nearly unbearable. My
husband took me back to
outpatients to see the Neurologist and he almost inferred it was all
in my mind. That was quite a low
time. I had been going down to A
& E nearly every day and pethidine was the only thing that
helped. My own Doctor who had
been on leave, came back and he was the one who helped me the
most. He put me on a drug that
people who suffer from migraines use. I could inject myself and the
relief I got was wonderful.
Slowly I started to get back to
normal. Walking was still very
hard and I was always falling. I
went back to work which was good. I started knitting to get my
hands moving and eventually this
did help, although the grandchildren didn‟t think much
of my efforts
The head pain finally went but it was a good two years before the
leg pain eased and even then I
would be asleep and my legs
would go into spasms. It would stop if I stood up.
Many funny things happened during this time. One time we
thought it would be nice to have a
family weekend camping. We
owned a little caravan so off all the family went to a beachside
camp. The camp owners were
very kind and gave me a key to a mobility shower and toilet
complex they had, as this was a
very slow business for me. My husband got hold of a porta pottie
for me to use at night which he
put in the awning. First night out
to the awning I go. I manage to get down but because it was very
low I couldn‟t get up. Not enough
strength in my arms or legs to push up. I didn‟t want to yell out
and wake up all the camp so I sat
and waited to be rescued. After about an hour my husband finally
realised that I wasn‟t in the other
bed and came and searching for
me. After that experience I woke him at night if I needed to venture
out to the awning. It was good for
a laugh the next day with the family.
I am fine again now but still have
numbness in my feet especially the toes and they are very
sensitive. I can‟t go barefoot
anymore. Still that is nothing much to put up with.
Life is still good and I am blessed with wonderful children and
grandchildren.
Handy Hints
Paddy Rule sent in these handy hints which they found very helpful after her husband had a stroke and left
him with a paralysed arm. They could be of assistance to GBS patients with little hand strength.
Like Boiled eggs but very hard to manage with one hand?
Solution: Get a solid square of timber (about the size of a bread and butter plate) and a
wooden eggcup. Screw eggcup onto the board which makes it very sturdy and it doesn‟t
move.
To Help in the kitchen:
Get a solid piece of timber and put several tin tacks through the timber from the bottom.
This device is great for peeling potatoes, carrots etc. The tacks hold the veges in place and
away you go with the peeler.
Trouble finding a knife sharp enough to cut meat when you have no strength to apply
enough pressure?
Try purchasing a lead cutting knife. This is very similar to the rocker knife but much
sharper. You can purchase them at craft shops that sell glass and lead for stained glass
making.
My GBS Experience - Garry Crabbe
How I got GBS started from getting a common cold which started about the middle of December 2007. In
the end the cold went to my chest, so I went to my local Doctor who prescribed Augmentin. Anyway, that
was for 21 tabs which finished on the 24th of December. No sooner had I these tabs when I noticed the
symptoms of tingling in my fingers and toes. But nowhere else.
At the time I just thought it was this tingling feeling from just coming off Augmentin, but as time went on I
noticed that I was starting to feel weaker by the day. On the day that I was sent to Wellington Hospital A &
E I couldn‟t walk properly at all. That was Saturday afternoon.
I was admitted to E Ward Sunday the 30th
of Dec. That night they took me up to Theatre to perform a
Lumbar puncture which I wouldn‟t wish on anyone.
I noticed after Sunday that I went downhill as far as talking, smiling or anything that I was used to doing.
They started me on Blood Plasma drips on Sunday for 3 days.
And going by the nurses I hit rock bottom on Wednesday the 2nd
.
One thing I do have to say is that the Staff in Ward E Neurological Wellington were fantastic.
So there you go. Prior to this I never ever heard of GBS and I do have to say it sure did scare me big time.
Prior to getting GBS I was very fit and active. So there we are. It will be great hearing from Mr. Bob
Stothart.
I was given some info from Wellington Hospital i.e. After GBS was won.
Regards Gary
Something from the Kitchen
Cookies and Cream Truffles
Serves: Makes about 14 balls
Ingredients:
500gms Oreo biscuits
250 gms cream cheese, softened
400gms milk chocolate
100gms white chocolate
Method:
1. Crush cookies in a blender.
2. Pour into a bowl, add cream cheese and mix well until there are no traces of white.
3. Roll mixture into balls, place on a baking paper lined tray and refrigerate for 45 minutes
4. Break milk chocolate into small pieces and put in a microwaveable container. Melt gradually stirring
every 20 seconds until smooth.
5. Coat balls thoroughly with melted chocolate. Place back into fridge to cool.
6. Finally melt remaining white chocolate and using a fork drizzle melted white chocolate over balls.
GBS Members
from the
BOP/Waikato
area enjoying a
Xmas lunch get
together.
Rosemary McBride Meike Schmidt-Meiburg Marty Hewlett Lauren McBride Fran and Grant McKay
Jan Gribble Celia and Gordon Stephenson Carmen Woodhouse Jan Morrow Ray Morrow Woody Woodhouse Glenda Ryan
Chris Hewlett
Barry and Judy Deed
MARILYN TURNWALD
GBS SURVIVOR-EXTRAORDINAIRE When the pins and needles first started in my hands and feet I ignored them, as we were flying out to
Australia on the 7th of January 2011 for a family reunion. I said to my husband that I could hardly walk the
long corridor down to the airport gate, so I had a feeling something was wrong. We were being met at
Brisbane airport by my sister who is a charge nurse in ICU at the Royal Brisbane Hospital. She took one
look at the way I was walking and after I described my symptoms she knew exactly what was wrong with
me. I was in ICU within hours. So much for the reunion!
I had never heard of Guillain-Barré Syndrome, so I
had no idea of the long road that awaited me. Within
3 days I was intubated and put on a ventilator as I
could no longer breathe for myself; my muscles had
entirely lost all power and all I could do was just
follow people with my eyes. I underwent numerous
CT and MRI scans as well as two lumbar punctures.
(On the „fun scale‟ of 1-10, they rate about minus
30). The high body temperatures were incredible and
they covered me in ice packs to cool me down. The
disease process also affected my heart muscle – my
heart rate would drop really low before it would pick
up again. At one point, my heart stopped altogether
and I suffered an asystolic cardiac arrest. To prevent
this happening again, I had a cardiac pacemaker
inserted.
Because I was going to be on life-support for quite some time, the doctors inserted a tracheostomy into the
front of my neck to connect to the ventilator, so that the tube in my mouth could be removed, to prevent any
long-term complications.
The nightmares and the hallucinations from all the pain-relief and sedation drugs took a lot of getting used
to. Because I could not fully close my eyes and they were in danger of being damaged, which they were
anyway, at night they were taped shut but with the hallucinatory drugs this was a terrifying experience.
During that time I was given 2 courses of intagram and two plasma exchanges. The boredom of those days,
of being unable to talk or communicate were intolerable.
Trying to communicate by blinking at an alphabet chart is
frustrating to all involved. After much wrangling with
our travel insurance company I was flown back to New
Zealand on the 23rd
of March, loaded into the back of the
aircraft with the passenger meals along with a Doctor and
a nurse. I was in ICU at Waikato hospital for another 3
months and was followed under the watchful eye of
neurologist Dr Chris Lynch whose knowledge of GBS is
incredible. One of his early comments was “you really
got hammered” and I guess it was then I realised how
sick I was. My church had set up a daily prayer group for
me, so at 5 o‟clock each day four people would come to
see me, and this I found very comforting. I only hope God will forgive me for all the “why me‟s” and „how
could you do this to me?‟ that I sent his way. Initial recovery from GBS is extremely slow so nothing
seemed to happen in ICU towards my getting better. Trips downstairs to the hydrotherapy pool were like a
major military exercise with a doctor, nurse, ventilator technician and 3 physios all in the water with me
holding me afloat. Eventually I moved to HDU where the speech therapists started to work on my vocal
cords and the physiotherapists began on my very flaccid muscles. I was then transferred to A4, then
MARILYN TURNWALD
GBS SURVIVOR-EXTRAORDINAIRE
Neurology, and then finally to the rehabilitation ward on ward 55. I was in that ward for so long that when I
finally left, the staff gave me a small party to send me on my way.
I needed surgery to close the hole in my neck from the tracheostomy site, and I still apparently have an
enlarged spleen. In hospital, one loses all dignity, but the nursing care in both the Royal Brisbane Hospital
and Waikato Hospital has been superb.
After 11 months in hospital I am slowly getting closer to walking, although I still have the pins and needles
in my hands and feet, and the lower half of my face is paralysed with Bulbar palsy. I am hoping to have all
feeling back in my feet within 6 months and only the tips of my fingers tingle now.
Because of my inability to fight „bugs‟ I
picked up a very nasty little critter
„microbacterium„ abscessus
bacteraemia/sepsis‟. Another lot of surgery to
remove the pacemaker and found the bug was
happily breeding in behind it. It took Dr.
Karalus months to finally send it on its way,
but the combination of strong drugs that I had
to take have left me with a severe hearing
impediment and I now require hearing aids.
I came out of hospital two weeks short of 12
months. I was in a wheelchair but am now
able to get around with a walking stick. I have
a great physiotherapist at the hospital gym and
still regularly see the eye department as my sight has also been compromised. I have given up any thought
of going back to work and haven‟t dared to drive my car as my feet and lower limbs are still quite numb.
We refer to the past 2 years as the years from hell, but in all this time, my husband and 3 children have
borne this burden with wonderful resilience as has my ICU trained big sister and for this I love them all
dearly. I am certainly well on the very slow road to recovery although there are still a few hurdles to „jump
over‟ and I am very grateful to Drs. Lynch, Karalus and Adiga for their ongoing care and support and to the
incredible nursing staff at the Royal Brisbane and Waikato hospitals. Also a huge thank you to Gordon
Stephenson and his wife Celia who visited me often all the way from Putaruru offering words of
encouragement. Without everyone‟s care and dedication, I would not be here today.
The GBS/CIDP Foundation International have advised us that they are getting a
number magazines to New Zealand address‟s returned. If you have not been receiving their Newsletter
and wish to do so please make sure they have your correct address. You can contact Shawn Coates
direct ([email protected] ) and she will take care of it personally or go on the website
www.gbs-cidp.org and fill out a contact form and note that it is an address correction.
Guillain-Barre Syndrome - How is it treated and what is the outcome?
This is the fourth in a series of 5 articles on GBS written by Dr. Gareth Parry to give an overview of the illness.
GBS is an acute paralytic illness that can lead to death unless appropriately managed and yet the majority of
patients will survive and return to a productive life. The primary role of management consists of supporting
the patient during the acute stage of the illness to allow recovery to take place. While important,
manipulation of the disease process itself to accelerate recovery, should not take precedence.
Supportive care:
Once the diagnosis is established a patient with GBS needs to be managed in a hospital setting. Not all
patients need to be managed in an intensive care unit (ICU) but such facilities need to be available. The
primary needs are the ability to monitor cardiac rhythm and respiratory function. Ideally heartbeat, blood
pressure and oxygen saturation (the amount of oxygen in the blood) should be continuously monitored since
these constitute the greatest risk during the first 24-48 after the onset of the weakness. If there is fluctuation
of blood pressure, an irregular heart rate or reduction of oxygen saturation immediate admission to the ICU
is essential for medical management. Similarly, breathing function needs to be assessed, not continuously
but frequently, and if it is declining admission to the ICU is essential in case artificial ventilation is needed.
With meticulous supportive care of cardiac and respiratory function about 95% of GBS patients will survive
even without specific treatment of the disease state as outlined below.
1. Management of breathing: About 25%-30% of patients will develop abnormalities of respiratory
function but not all of those will require artificial ventilation. If artificial ventilation is required a
tube is inserted through the nose and passed into the trachea (windpipe) and a machine pumps air
into the lungs. If artificial ventilation is required for more than about 48 hours a tracheostomy will
be necessary; a tube is inserted through in incision in the lower part of the neck just above the
breastbone. Artificial ventilation can be continued indefinitely until the muscles of the diaphragm
recover sufficiently to support natural breathing.
2. Management of cardiac function: If serious abnormalities of heart rhythm occur medication to
stabilize it or even a temporary pacemaker may be needed but this is very rare. Marked fluctuation
of blood pressure may occur but seldom needs treatment. However, awareness of the risk of a severe
fall in blood pressure when the patient first gets out of bed is important; many patients have
becoming dizzy and fallen or even blacked out completely when first taken to physical therapy.
3. Management of bowel and bladder function: Bladder problems are common in GBS and most
patients who are unable to walk will have a catheter placed in the bladder. Incomplete bladder
emptying increases the risk of infection as does the presence of a catheter and this needs to be
carefully monitored. A high fiber diet should be given to those still able to eat and limited use of
laxatives may be necessary to prevent constipation.
4. Preventing blood clots: Blood clots may form in the veins of the legs and pelvis of patients who are
unable to walk and these may travel to the lungs causing the life threatening condition of pulmonary
embolism. To reduce this risk such patients will receive injections of low dose heparin, a blood
thinner that reduces clot formation.
5. Pain management: Pain management during the early stages of GBS can be challenging.
Inadequately controlled pain obviously can have a major impact on the comfort of the patient and
can also exacerbate autonomic instability, leading to potentially serious heart rhythm and blood
pressure problems. However, effective treatment of pain may necessitate medication that can further
suppress breathing function in patient in whom it may already be compromised. The patient and
family member must be made partners in this decision. Some patients may choose to tolerate the
pain rather than risk having to go onto the ventilator. Simple analgesics such as ibuprofen, naproxen
or paracetamol may be tried but are seldom helpful. If the pain is of sufficient severity to need
medication some form of narcotic such as morphine or its derivatives will usually be necessary and it
is these medications that can suppress respiration. Medications such as amitriptyline and gabapentin
Guillain-Barre Syndrome - How is it treated and what is the outcome?
that are used to treat the chronic neuropathic pain that sometimes follows the acute paralysis (see part
2 of this series) can also be tried and may be helpful but are seldom sufficient on their own.
6. Rehabilitation: The process of rehabilitation begins at the earliest stages of the disease. When the
muscles are extremely weak this may consist only of passive movement to ensure that flexibility of
the muscles and joints is maintained until the nerves recover their function. Later, more active
movement will be incorporated into the physical therapy program. Occupational and physical
therapists are amongst the most important members of the GBS management team and participate in
care from the ICU all the way to discharge home and even beyond.
Treatment of the disease process:
GBS is an autoimmune disease in which antibodies attack the peripheral nerves. Treatment of this abnormal
immune attack was initially tried with steroid medications such as prednisone but subsequent research
showed that this was ineffective. In fact, patients who received steroids fared slightly worse than those who
did not. Steroids have many side effects and should not be used in GBS. Paradoxically, they can be
extremely useful in CIDP as will be discussed in a later installment.
In the early 1980‟s plasmapheresis(PLEX) was tried and several large studies confirmed its benefit.
Experimental studies in animals showed that there was an antibody in the blood of patients with GBS that
could produce inflammation and nerve damage when injected into the nerves of animals. It was postulated
that removal of the antibodies by PLEX should accelerate recovery in GBS patients.The early studies done
in Europe and the United States showed that patients who received this treatment spent less time in the ICU
and less time in hospital than those who were not treated. PLEX quickly became the standard of care for
GBS patients, at least for those with impaired ability to walk. The PLEX procedure consists of inserting a
large catheter into a vein, usually in the region of the neck. Blood is withdrawn and run through a machine
that separates the cells from the plasma. The cells are then returned to the patient along with donor plasma
or a synthetic plasma substitute. Since the antibodies reside in the plasma fraction, they are removed and
can no longer attack the nerve and the natural process of healing can begin sooner, leading to more rapid
recovery. Unfortunately, PLEX does not affect mortality or the degree of recovery, just the rapidity of
recovery.
In the early 1990‟s PLEX was largely superseded by intravenous infusions of immunoglobulin (IVIg).
Immunoglobulins are the proteins in the blood that include antibodies, such as those attacking the nerves in
GBS, and Igis derived from donated blood plasma. The exact reason this treatment works is not entirely
clear but it is thought that the antibodies in the donated Ig bind the harmful antibodies that the GBS patient
is producing, thus preventing them from attacking the nerves. Experimental studies in patients with GBS
showed that IVIg was at least as effective, possibly superior to PLEX. The main advantage of IVIg over
PLEX is ease of administration and patient tolerance. IVIg can be easily administered through a vein in the
arm and does not require expensive equipment. Also, PLEX can occasionally worsen the heart rhythm and
blood pressure abnormalities and this does not occur with IVIg. IVIg is administered at a dose of 2 gm/kg
divided into daily doses given over 5 days. Anecdotal evidence suggests that some patients who remain
very weak after the first dose of IVIg may benefit from a second dose. A small study failed to confirm that
benefit but larger studies are planned.
Antibody attack on the nerve requires a chemical from the blood called complement and it has been
suggested that inhibition of complement may reduce injury to the nerves and speed recovery. There are
complement inhibitors available that are safe and further studies are planned to determine whether they can
improve outcome and are more effective than IVIg or can be used as supplementary treatment.
Not everyone with GBS needs to be treated. None of the studies included patients who were still able to
walk; prognosis in these patients is so good that the risks of the treatment, even though they are small, are
not justified. If a patient is still able to walk but is progressing rapidly it is not wise to wait until he cannot
walk to start treatment. Patients with the Miller Fisher form of GBS, a rare variant that affects the eyes and
balance but does not cause weakness, also do not need to be treated unless the balance is so bad that they
cannot walk safely because prognosis is so good without treatment.
Guillain-Barre Syndrome - How is it treated and what is the outcome?
It is important to start treatment as early as possible. Treatment administered more than two weeks after the
onset of weakness is probably not effective and even treatment given between one and two weeks after
weakness onset is of questionable benefit. This is why early diagnosis is so important.
Long term outcome with GBS:
From its earliest recognition as a distinct disorder, the excellent prognosis of GBS has been repeatedly
emphasized. It was this good outcome that led Guillain and colleagues to recognize that is was distinct from
polio. In all GBS patients progressive worsening of the paralysis stops within 4 weeks of onset. There is
then a period of plateau that may last a few days to a week or two and then improvement occurs. In rare
cases, complete recovery may be seen within a few weeks but more commonly there is a slower return of
function of many weeks or months. Sensation is not as severely affected in GBS but paradoxically, if it is
affected, it recovers more slowly. Reflexes are the last to return but this has no importance for the GBS
patient; it is simply a sign for the neurologist to assess. Autonomic abnormalities are short lived, usually
resolving within the course of an acute hospital stay.
The excellence of the prognosis has probably been a little exaggerated. Compared to polio it does have a
superb prognosis since recovery from severe paralysis in polio never occurs. The majority of GBS patients,
about 70%, do return to normal strength. Many of these do actually return to fully normal function,
returning to all former physical activities and employment. However, some will be found to have subtle
residual findings on careful neurological examination and the nerve conduction studies may remain
abnormal. These subtle abnormalities may have important function consequences; some elite athletes have
been unable to return to their former level of athletic performance despite apparent full neurological
recovery. Residual fatigue in patients who have fully recovered strength also is a problem. One Dutch
study showed that about 80% of their GBS patients had residual fatigue that persisted for years. Our own
much smaller study in Minnesota indicated that about 60% had residual fatigue. Some of the patients in
both studies did have residual weakness and sensory loss as well but some seemed to have completely
recovered their neurological function but were limited by fatigue. The basis for residual fatigue is unknown
and unfortunately it does not respond well to stimulant medications. Weight loss and conditioning exercises
do seem to be of benefit. It is important to ensure that residual fatigue does not have another cause.
Depression may manifest only as fatigue and is quite common after GBS. Many systemic illnesses such as
anemia, low thyroid function, diabetes, etc, can also cause fatigue. Although GBS does not increase the risk
of these disorders they should be considered as they may be treatable. Sleep disorders are also quite
common and may contribute to fatigue.
What about the 30% of patients whose neurological function does not return to normal? Firstly, some
patients (about 5%) still die from the complications of GBS, usually pneumonia or pulmonary embolism but
a few from heart rhythm disturbances. Others improve but do not ever return to normal. These are patients
whose GBS was severe, almost always with severe associated axonal degeneration (see part 1 of this series).
Many are completely paralysed and ventilator dependent at the lowest point of their illness. Even in these
severely involved patients some recovery occurs and it may be quite dramatic but is slow and incomplete.
Cranial functions such as facial strength, speech and swallowing almost always recover although mild facial
weakness may persist. Breathing also always improves; in 40 years I have seen only one patient who
remained on a ventilator after 2 years. Limb strength improves more slowly and to a smaller extent.
Proximal muscles, those closest to the spine, recover before the muscles of the hands and feet. Persistent
foot drop is the commonest residual effect. Loss of sensation in the feet and, rarely, in the hands may also
persist. One of the most distressing residual symptoms in these severely involved patients is pain. This is
both the neuropathic pain that arises from the nerve damage and pain from joints and surrounding structures
due to overuse and instability because of the weak muscles.
The degree and rapidity of recovery is directly related to the severity of the initial weakness and the severity
of the axonal degeneration and these can be accurately assessed at the time of the initial illness. Thus, it is
possible to predict at that early time where an individual patient is going to be in 1-2 years. However, it is
not always wise to provide that information to the patient when they are still trying to deal emotionally with
a life changing event. Also, these predictions are not always correct. I recommend that emphasis be placed
on the almost invariable improvement and address the degree and timing of improvement during the period
of rehabilitation.
We are looking for a name for our magazine.
Have you any novel, exciting ideas?
If so send them in to the Secretary Tony Pearson.
His contact details are on the front page of the magazine.
Support Kathy Eggers when
she competes in the
Taupo Ironman
March 2013
Bay of Plenty / Waikato Coffee Group.
Venue: Robert Harris Coffee Shop Matamata. Across the road from the
Information Centre. Easy access.
Date & Time: Friday 18th
February 2013 at 12.30
Wanted Have you made or found a device that helps with day to with other members. Please send to the Editor. E Mail: [email protected] or Mail to Chris Hewlett 51 Killen Road, RD 2 KATIKATI, 3178
Moving
or Changing your Email Server?? Don’t forget to let the editor
know your new details.
GBS BI-ANNUAL CONFERENCE 2013
FRIDAY 26th
April 2013 to SATURDAY 28TH
APRIL 2013
Brentwood Hotel Wellington
Get your registration in today and be part of this wonderful event and gain a better understanding
of GBS/CIDP and the road to recovery.
Subs Are Due Now A subs renewal form is attached to this newsletter.
Please fill in and send to the Treasurer ASAP.
We thank you for your continued support.
Guillain-Barre Syndrome Support Group of New Zealand
CONFERENCE PROGRAMME
April 26 – 28, 2013
Brentwood Hotel, Kilbirnie, Wellington
FRIDAY 26 April 2-00pm Training for Hospital Visitors and Local Coordinators
4-00pm Registration
5-30pm Wine, Cheese and Chat with conference members
(Own arrangements for dinner)
SATURDAY 27 April
8-30am Official Welcome and Conference Opening by Steve Chadwick, Patron,
followed by Presidential welcome to the Members of the Medical Advisory Board.
9-00am Keynote Address: Gareth Parry: GBS Overview
9-45am Morning Tea
10-15am Keynote: Annette ICU
10-45am A personal encounter with ICU: Lil Morgan
11-00am Keynote Address: Suzy Mudge: rehabilitation
11-45am A personal encounter: rehabilitation
12-00noon LUNCH
1-30pm Keynote Address Michael Baker: campylobactor
2-15pm A Personal Encounter
2-30pm Keynote: pain
3-00pm Afternoon Tea
3-30pm Keynote: fatigue
4-00pm A personal encounter with pain and fatigue: Pralene
4-30pm Ask The Experts
7-00pm Conference Dinner (optional)
SUNDAY 28 April
8-30am Meeting of the Trust
8-30am Meeting of the Medical Advisory Board
9-30am AGM of the New Zealand Support Group
Organised by the Guillain-Barré Syndrome Support Group of New Zealand Trust
Enquiries to Bob Stothart [email protected]
Registered Charity No CC20639
www.gbsnz.org.nz
REGISTRATION FORM
Guillain-Barré CIDP Conference
Friday 26th April – Sunday 28 April 2013
Name…………………………………………
Address………………………………………
……………………………………………………
Phone……………..
Email………………………….
Please enclose registration fee with this form and
post to: Tony Pearson, Skylark Ridge,
113 Weka Road, Mairiri, RD2, Upper Moutere, Nelson, 7175
$100.00 full registration…………………………………
$80.00 for Saturday only………………………………..
$50.00 for second person in a family……………………
$30.00 for full-time students…………………………….
$40.00 for conference dinner, this is optional………….
TOTAL $……………………………………………………
A $20.00 late fee will be required for registration after 12 April 2013
Make cheques payable to Guillain-Barré Syndrome Support Group and
cross, Not Transferable
Reserve your own accommodation, quote reference73929 and mention GBS
Conference to get special rates at the Brentwood Hotel.
(Phone: 04 920 0400). Please specify any disability requirements.
Guillain Barré Syndrome Support Group
Trust N.Z. Registered Charity No CC20639 www.gbsnz.org.nz
INVOICE 2012-2013 MEMBERSHIP ANNUAL
SUBSCRIPTION
Subscriptions for membership of the Group for the financial year commencing on 1
st December 2012 are
now due and your ongoing support would be appreciated to help further the important roles the Group plays
in supporting new and existing sufferers of this devastating syndrome.
Please detach this page, complete the information requested and send with your remittance to the
address below.
Subscription Rates
Single Annual $10.00
Single Life $100.00
Medical Group $50.00
NAME(s)…………………………………………………….
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If your address or contact details have changed recently please make a note of the new details
here…………………………………………………………….
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Subscriptions can be paid Direct Credit the Group’s Bank Account
Taranaki Savings Bank (TSB) Moturoa Branch New Plymouth
Bank Account No:- 15 3949 0339362 00
Be sure to reference your name on the transfer
You can also now receive the Group‟s Newsletter by e mail (thus helping us with the cost of stationery and
postage) if you would like to take up this option and have not already notified our Editor Chris Hewlett
please e mail her at ([email protected]) or add your e mail details below and we will arrange for this to
happen.
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Thank you on behalf of the Board of Trustees.